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15 minutes with MS Trust Research Manager Tracy Nicholson

11 May 2015

Tracy Nicholson is the Research Manager at the MS Trust. She was diagnosed with MS in 2000. To celebrate their 50th birthdays, she and her friend Katrina decided to do a cycle, trek and kayak adventure in North Vietnam to raise funds for the MS Trust.

How did you come to work for the MS Trust?

I was diagnosed with MS in 2000. Back then information about MS wasn’t widely available, but at the time, quite coincidentally, my husband was working on the development of the MS drug Tysabri, so he had been working with the MS Trust. He introduced me to Chris Jones, the founder of the Trust, and she was absolutely brilliant – she really understood what I was going through. I lived quite near the Trust’s offices in Letchworth so she asked me to come in and meet the team. It was about the time that the Trust was thinking about becoming involved in the Risk-sharing Scheme to help people with MS access the first four MS drugs. I was working in clinical research at the time so they asked if I would be interested in helping out.

What difference do you think the Risk-sharing Scheme has made for people with MS?

I know it’s made a huge difference. I was diagnosed by a general neurologist in a hospital without any specialist MS nurse. When I compare that to now – when I have an MS specialist neurologist, an MS specialist centre, an MS nurse and I get six-monthly reviews – it’s come so far. And that’s because of the Risk-sharing Scheme.

How did your Vietnam trek come about?

It came out of turning 50. I’ve never really travelled. I’ve been to lots of places but I’ve never packed a backpack and gone off into the unknown. So this was my opportunity to do it. The trip itself was completely self-funded. We found the trip we wanted to do and all my friends and family gave donations towards my ticket in lieu of 50th birthday presents. I had already made the decision that I was going to challenge myself but then I thought it would be good if the MS Trust could benefit on the back of it.

What was the most challenging part of the journey?

The weather! We were led to believe it would be 16-19 degrees at this time of year – we thought it would be like a nice English summer. In reality it was 30-35ºC and incredibly humid. The accommodation was also quite challenging. We stayed in homestays (local villagers’ own homes) and it is fair to say that I didn’t really know what to expect. Staying in the equivalent to a hut, sleeping on thin mattresses in open rooms with people I didn’t know, both men and women, and needless to say no privacy! Not my ideal for a good, restful night. And then there were the toilets – it made France in the 1970s look positively luxurious!

What was the highlight?

Travelling through the villages and the insight into the locals’ lives. It felt a real privilege to have been able to get up close and personal. Their lives are so different from ours, with so little material wealth, but they are so happy. I’ve never done anything like that. I think if you went as a tourist you simply wouldn’t get that insight into the country: the rice paddies and the buffalo.

What kept you going?

At one point I got really sick and people were telling me I didn’t have to do the 50k cycle ride planned for the following day. But I kept saying I do have to do it! A big part of my motivation was that I kept thinking all those people who had sponsored me and raised all that money. I know what the MS Trust does. I know all the things they do, all their enthusiasm and energy. And I know that it’s all done on a tight budget. Every penny counts. It doesn’t matter how big or how small the amount you raise is, whether it’s £5, £50 or £500 it can make a real difference to someone living with MS.

What would you say to someone considering taking on a similar challenge?

Just do it! I had no idea what I was letting myself in for. But once I got there, it was amazing how you just get into the zone. And it’s amazing what you can do. You just focus on the challenge and getting through each day and as I look back now I feel enormously proud of what I have achieved for both myself and the MS Trust. It was a great experience in a stunning part of the world and it has left me with so many great memories.

This article is part of the May 2015 issue of Open Door, the MS Trust’s quarterly newsletter.